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Sunday, July 6, 2014

Kayli sustained trauma to her brain, at 4 months old, when she passed away for 32 minutes, in a PICU room, 8 hours after open heart surgery. She lost all abilities and reflexes, with the exception of breathing. Kayli spent the first few years of her life, in 9 therapies to overcome her delays caused by the hypoxia. She did well in the therapies, and learned to move her muscles well enough to push adaptive buttons! Kayli was in the following therapies: Early Intervention;PT (physical therapy)OT (occupational therapy)DT (developmental therapy)DTV (developmental vision therapy)DTH (developmental hearing therapy)ST (speech therapy)Outpatient:PTOTSTA couple of years ago, Kayli trialed, and proved she could handle, a Passi Muir (speaking) valve. Although we were told a person cannot get reflexes back once lost, and that if there is absolutely no therapy to help with complete loss of muscle tone in the trachea and/or larnyx, we found that Kayli started controlling her secretions and started swallowing on her own when she wore the Passi Muir valve!!! This was a HUGE accomplishment for Kayli!!! Even with her success, Kayli has faced many more traumatic medical inflictions. She has gone on to survive 6 more traumatic and life medical altering incidents. She has been granted a total of 8 miracles of life, for which we are grateful, but unfortunately, she also sustained more brain damage. Kayli keeps fighting to stay with us, and thrives with therapies, so it is our every intention to stay one step ahead of her in hope's of paving a smoother path for her. Currently, Kayli gets

PT

OT

DT

ST

DTV - iPad, Smart board, eyeglasses

CVI therapy (eye training for eye gaze programs)

DTH - FM system and hearing aided

at school, but those therapies are limited, as they only apply to academic goals. Current/evolving outpatient therapies include

Last year, we put Kayli in Aquatic therapy, and she did VERY well! She was able to kick her legs, and splash the water with her hands! Kayli has always loved her baths, and well, any time she can spend in the water! Kayli was in aquatic therapy 6 hours a week, and loved it! Unfortunately, the therapeutic pool she was using, closed for renovations, and Kayli was dropped from Aquatic therapy. :-( We recently found another therapeutic pool in our area, that was just built, so she will be going back into Aquatic therapy soon! :D Kayli's current outpatient therapies include PT and Svetlana Masgutova Reflex Integration therapy (through OT). The reflex therapy is unique in that primary reflexes, that somehow were lost or not further developed, are re-taught. Kayli is doing well with this therapy! We even saw a great improvement in her bladder reflexes, during the evaluation session! lol In the last month, we had Kayli evaluated for Hippotherapy (Equine), but she was not eligible because her spinal rods were a contraindication. We were told she would be eligible for Horse driving (where she would sit in a wagon led by a horse), but the therapy is limited in the areas it is practiced. We may revisit this method at a later date.

Kayli will also starting Vital Stim therapy soon. Vital Stim is a ST, that will help Kayli strengthen her trachea (airway) muscles, and her Larynx (vocal chord) muscles. It is another aggressive therapy, where she will be attending therapy sessions 3 times a week, for 8-12 weeks. We can't wait for her to start! :D We recently contacted a University in the USA, that practices stem cell therapy, but alas Kayli was not a candidate for the clinical trial, because she does not have her own cord blood (we were denied saving it at birth, because of her Trisomy 18 diagnosis). We are always looking for more avenues to help Kayli in her recovery, and are considering these additional therapies for Kayli, to aid her in recovering brain function:Cuevas Medek ExercisesG-therapyAdvanced Biomechanical RehabilitationHyperbaric treatmentsNeuro suit therapyAnat Baniel MethodBiomedical Protocol Institutes for the Achievement of Human Potential If you can suggest or give your opinion of any other therapeutic methods, please feel free to leave a comment or message us!

This past winter:
As I drove alone to the 2 appts of the day, I struck up a conversation with God. On my left were expensive houses with plenty of houses sitting on grand yards. One caught my eye, and I told God that if He planned on us owning our own home again, I'd like one like THAT one...only a ranch with many rooms to spread out in...and no stairs so that Kayli could go throughout the house with us, in her wheelchair...but the yard was good, and the airy feeling of the walk out backdoor looked good...so I guess a basement would be ok. I turned the corner and as I drove on, the houses started looking a little less grand. I found myself thinking about a friend who's furnace was out and she, her husband, and her daughter with special needs sat in the cold, yet our furnace was working and my kiddos with special needs were warm at home. I thought about all the people who's house windows were not new like ours, but rather breezy even with plastic covering them. And those who's car wouldn't start today, yet here I drive, with a new battery. The guilt and shame grew like fungus, in my mind. Here we are, no longer homeless, and my choice of conversation with God was about what more I wanted...not of Thanks. So, I started thanking God. I thanked him for always being there for me. For Blessing me with my kiddos with special needs, to teach me about life with Him. For carrying us through the life threatening syndromes and diseases. For the warm house and full cabinets. And for the dimes (see my previous story about God and the dime, here).

That's when it hit me. I needed to leap in my faith. Many don't know this about me, but I carry shame every day. I give freely to others, but when I am thanked....I feel guilt. You see, I only give to others when it doesn't affect me. I don't sacrifice anything when I'm helping others. I give away extra medical supplies, and clothes that the kids have outgrown. I give away groceries that I know I probably won't make or eat, and I make excuses when I'm asked to sacrifice something. My time, my money, my understanding....I reason why I can't right now. I hold them all close to me and judge others while checking my inventory to see if I have anything extra to share. As I passed a shabby house with plastic on it's windows and a minivan 2 decades old, in the rock driveway, I asked God to help me take the leap of faith in Him. I told Him that I want to give something that we (my family and I) need, to someone else in need. I asked God to help guide me, so that I would know who He wanted me to give to. I asked God to use me, to carry out His plan in someone else's life. I felt God tell me that I was to stop at a house, and give $100 to the family that lived there. It was a perfect plan! $20 would be easily excused for our family, so that would not be enough. $100 would be enough to notice missing in our pockets when paying bills.
I started searching, with my soul, for the family to share my faith with. Nervously, I turned onto a side street, and hesitantly crept into the driveway that seemed to pull me in. I looked at the house and thought to myself, "what if this is just where I want to go, and not where God wants me to be?". I backed out of the driveway, and started driving away, afraid of making a wrong decision, and failing as God's servant. Unsure of my choice, I decided to put God to the test. I said to Him, if You want me to give the money to someone in this house, then surely you will give me a sign. I then took one more look for a sign of faith. My eyes focused on the shabby house again, and although the first sight of the old leaking windows, and de-compensating roof showed a need for the money, I had not seen any sign of God there. At the second look, I saw the sign from God appearing out of nowhere.... a simply perfect cross made of palm leaves, on their door! A smile came over my face, as a chuckle escaped my throat. "Thank you God!", I say out loud. "You are always with me, and hear me". I quickly backed up my vehicle, pulled in the driveway, and rushed up to the door. Thanks be to God, for showing me the way!!! I anxiously knocked at the door, without a plan in mind. A man, wearing a coat even though he was in his house, answered the door. I stumbled my words with excitement, as my hand extended to his, with the $100 bill. I said "God Blessed You, this is for you!". The man stuttered with words of confusion, asking me why, and assuring me it was not his to take. I told him it might be because he prayed for it, or maybe because God knew he needed it? I told him I didn't know why I chose him, but I have faith that God does. It is his to keep, because he has Jesus in his life. With tears swelling in his and my eyes, and as he stared at the bill in his hand, I thanked him, and drove off with such love in my heart. Love for my fellow follower, and love for our mentor and best friend, in Jesus Christ. What an exhilarating feeling, to give something that I needed, to someone who also needed it. Not necessarily for monetary value, but for a reminder of our unconditional faith in God. <3

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥